Saturday, August 4, 2012

A year later...

I was recently looking through an old notebook and found the following:

Juliana plan

1.) Discourage vomiting by smaller, more frequent bolus feeds. Start with 40ml bolus, about once an hour. Be careful of sensitive times of day, 2am-11am.
This was back when vomiting was common and it seemed to be easy to overfeed her. I sometimes wondered if she had delayed gastric emptying. Maybe she did.

2.) Work on gag reflex by playing more with mouth.
This was because she would gag spontaneously sometimes which would ultimately lead to vomiting. Her mouth needed desensitization. 

3.) Continue to spoon feed and offer liquids.
She was just starting to get used to small amounts of food and drink.

4.) Burp her so that she gets used to it.
Burping frequently led to vomiting.

I'm amazed by the amount of healing that can happen in a year's time. Someone once told me that natural healing is a slow process and it turns out that unfortunately this is a true statement. There was no quick fix. There was no magic pill. Doctors, unfortunately, were useless. It was a long, slow, difficult process. Now it's hard to believe that this little girl used to be 100% tube-fed.

Chicken wings - her favorite!

Egg drop soup - also a favorite!
These days I am not so concerned about Juliana's diet or her feeding skills. Both are in pretty good shape. I have new worries, of course: the sensory issues she has with her limbs (she lacks some awareness), lack of appropriate mobility (she can roll with the best of them but I want more), the fact that she still doesn't transition to/from a sitting position (though she can do this with only minimal assistance). At this point I am only mildly concerned about her speech and I try not to compare her to her super-verbal brother. Hopefully in a year from now these concerns, like the concerns listed above, will no longer be on my radar.


  1. GOOD WORK SISTER! Way to push through! I'm always available to help you with WHATEVER you need!


  2. I recently found a book that showed the millilitres Sophie was taking over the day when she was about 9 months old- 20 mls 9am, 40 mls 9.50am, 50 mls 11am, 25 mls 11.30am etc etc etc to a grand total of about 450mls per day over 10 hours of constant feeding. Pages and pages of it Plus records of poos etc. It made me a bit sad and brought a knot back to my tummy when i first started to read it. it put me back there. But then I thought about where we are now. It seems unbelievable! Like you, our worries are different now. But the worry of trying to keep your child alive and get enough calories in was a much greater and constant stress than the ongoing worries we have now. When a child eats, and you know they aren;t going to starve, then life is so much brighter! Well done :)

  3. :) big grin. What amazing progress and the pictures! adorable! love love love the chicken wing. adding the newer concerns to my prayer list. good job mama!